Stevens Joanne, Schneider Logan D, Husain Aatif M, Ito Diane, Fuller Douglas S, Zee Phyllis C, Macfadden Wayne
Global Medical Affairs, Jazz Pharmaceuticals, Philadelphia, PA, USA.
Stanford University Sleep Medicine Center, Stanford University School of Medicine, Stanford, CA, USA.
Nat Sci Sleep. 2023 Aug 2;15:593-606. doi: 10.2147/NSS.S396641. eCollection 2023.
Idiopathic hypersomnia is a debilitating neurologic sleep disorder characterized by excessive daytime sleepiness, sleep inertia, and prolonged sleep. Its impact on patients' quality of life and daily functioning has not been fully elucidated. The Real World Idiopathic Hypersomnia Outcomes Study (ARISE) evaluated the daily functioning, relationships, cognition, emotional well-being, and productivity/employment of participants with idiopathic hypersomnia.
ARISE was a US-based virtual cross-sectional survey comprising multiple patient-reported outcome measures (Functional Outcomes of Sleep Questionnaire, short version [FOSQ-10], Quality of Life in Neurological Disorders [Neuro-QoL] Social Roles and Stigma domains, British Columbia Cognitive Complaints Inventory [BC-CCI], Patient Health Questionnaire [PHQ-9], and the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI:SHP]). Participants were adults 21-65 years of age with idiopathic hypersomnia. Data were analyzed for all participants and for subgroups with/without long sleep time (LST; self-reported sleep ≥11 hours in 24 hours).
Of 75 participants enrolled, most were female (81.3%) and the mean (SD) age was 34.1 (10.7) years. Participants' scores on the FOSQ-10 (mean [SD] score: 10.7 [2.8]) and the Neuro-QoL Social Roles (43.4 [4.2]) and Stigma (57.3 [5.9]) domains reflected impairments in daily functioning and quality of life. More than half of participants reported moderate to severe cognitive complaints (BC-CCI; 62.7%) and moderate to severe depressive symptoms (PHQ-9; 66.7%). Scores on the WPAI:SHP showed substantial impairments in absenteeism, presenteeism, overall work productivity, and overall regular daily activity (mean percent [SD]: 12.3 [23.6], 47.6 [22.7], 51.4 [24.7], and 64.0 [21.9], respectively). These considerable impairments were found in participants with and without LST.
ARISE participants with idiopathic hypersomnia demonstrated poor quality of life and impaired functioning across multiple symptom domains.
特发性嗜睡症是一种使人衰弱的神经睡眠障碍，其特征为日间过度嗜睡、睡眠惯性和睡眠时间延长。其对患者生活质量和日常功能的影响尚未完全阐明。真实世界特发性嗜睡症结局研究（ARISE）评估了特发性嗜睡症患者的日常功能、人际关系、认知、情绪健康以及生产力/就业情况。
ARISE是一项基于美国的虚拟横断面调查，包含多项患者报告的结局指标（睡眠问卷功能结局简版 [FOSQ-10]、神经疾病生活质量 [Neuro-QoL] 社会角色和耻辱感领域、不列颠哥伦比亚认知主诉量表 [BC-CCI]、患者健康问卷 [PHQ-9] 以及工作生产力和活动障碍问卷：特定健康问题 [WPAI:SHP]）。参与者为21至65岁的特发性嗜睡症成年患者。对所有参与者以及有/无长睡眠时间（LST；自我报告24小时睡眠≥11小时）的亚组数据进行了分析。
在75名登记参与者中，大多数为女性（81.3%），平均（标准差）年龄为34.1（10.7）岁。参与者在FOSQ-10（平均 [标准差] 得分：10.7 [2.8]）、Neuro-QoL社会角色（43.4 [4.2]）和耻辱感（57.3 [5.9]）领域的得分反映出日常功能和生活质量受损。超过一半的参与者报告有中度至重度认知主诉（BC-CCI；62.7%）和中度至重度抑郁症状（PHQ-9；66.7%）。WPAI:SHP的得分显示在旷工、出勤、总体工作生产力和总体日常常规活动方面存在严重受损（平均百分比 [标准差]：分别为12.3 [23.6]、47.6 [22.7]、51.4 [24.7] 和64.0 [21.9]）。在有和没有LST的参与者中均发现了这些严重受损情况。
ARISE研究中的特发性嗜睡症参与者表现出生活质量差，且在多个症状领域功能受损。
